Probably,along with millions of fibro sufferers , I would say that waking up and getting .out of bed is one of the most painful and difficult things I have to do in my day. The next few hours spent creaking and groaning round the house, trying to gain some laxity of limb and clarity of thought are not too much better.

I think many of us would say that middle to late afternoon would be the optimum time for some housework or a little outing. Thats when the meds are flowing and what little energy we can summon is at its peak.

That bit of housework or trip to the shops though will have us static again, cup of tea and a biscuit to restore flagging blood sugar, a final push to cook a meal then the evening, more meds and bed

BUT

I find that the calmest, most pain free time is after everyone has gone to bed, say around half eleven onwards. I sit at the table in the big wooden carver chair, wedged in with cushions and a hot water bottle, and watch programmes on Netflix or listen again on BBC I player to my favorite series or comedy shows. I knit or doodle or play a non taxing block game on the laptop.

I gve myself PERMISSION to stay up late. Some might call it avoidance. Avoidance of going to bed at the same time of night as my husband, something in my head tells me this is better for both of us than the invariable attempts to "start something" which I know I can't finish or if it happens then I am in pain and unfullfilled and he is left feeling guilty.

So I inhabit my little night world of denial, sometimes I don't bother to go to bed at all. Often can be found doing ironing at four in the morning feeling strangely energetic and elated.

Of course this does not continue for more than a few days before I crash entirely.

I am here now, at the other side of this screen from you, contemplating a drink of milk and a bit of cake to commiserate with myself for the failed meringues I made earlier!!! It is a mate's birthday party tomorrow and I promised at least two puds. I used to be "up" for anything but since menopause and the fibro I always feel like a party pooper or the one people get trapped with in the corner and have to listen to me moan about my latest ache or twitch.

"THIS IS NOT REALLY ME" I want to say but it comes out as "I CAN'T DRINK, I'M ON MEDS. OFF TO HOSPITAL FOR ANOTHER APPOINTMENT NEXT WEEK, .A LOT OF PAIN IN MY.........TE DAH TE DAH. Internally my brain is sayiing shut uP, shut up, talk about the weather, eastenders, the price of beer, ASK THEM HOW THEY ARE.

I have wandered off my original point and I have to be up early as I have people staying over.

23 Replies

Morning Spidey I totally agree with you Morning are by far the worst as you say whilst cranking up the motor and trying to plan through the fog what actually needs to be achieved.Mid day not so bad then early eveining as you say can be half and half or I may be cat naping. Bed time well as my pain killers wear off i know when the last lot are due and the bed is it comfortable -- not really - sometimes night is incessant but at least if I get positioned right the old back can be not too bad - I wish xgins

I find getting up and dressed very hard very stiff getting up and down the stairs to get my son up of work not easy . Morning at work pain sat or standing at the checkout , stiff when have got to get up . My most comfortable time is evening when sat relaxed the best I can if their is no problem s with eldest son who has learning disabilities but I find my self tired all the time find my self nodding off to sleep .

4 years agoHidden

Hi spidey

Pretty much the same as you. Mornings are by far the worst. I love the quiet of the night. It's when I can be most creative. I can move at MY pace and don't have to consider others. A teal secret indulgance. I am working at normalized my day so I do have some function in the morning, but I do wonder whether I avoid going to bed earlier because of enjoying the night time freedom from symptoms. I know chemically I have no choice, bit it doesn't stop me feeling guilty lol

Milk and maringues though are forbidden due to my avoidance of IBS. I just can't handle that pain, or the build up of toxins.

My evenings are taken up now so no nights out any more.....or very rarely. I can't tlerate alcohol now. I feel like a complete social recluse.....if you'd known me years ago that would have been hard to imagine. Instead I attend church and 12 step meetings and work at repairing my soul. Plus babysitting my grandson....which is an exhausting joy

I've gone from craving a company to almost avoiding it. That's a direct result of this illnes. Conversion from extrovert to introvert.

I wake up KNOWING I have this illness and go to bed hoping I'm cured lol but it means during a crash , I also know....this too will pass.

For me the worst time is definitely morning. From waking up shattered after a disturbed night to trying to get dressed, bra the most definitely hell, trying to get downstairs, cos my knee's playing up and my balance is rubbish. I cannot stand for more than about 10 seconds without my back and knees telling me to hurry up and sit down!!

The most comfortable time is early evening, from about 6pm to 11pm when I can sit with feet and legs raised, watch TV and chill - ax!! XXXXX

Another definitely worst in the morning, it takes ages for me to loosen up and get going. I try and do housework mid afternoon if I have the energy, and that varies so much day to day. If things are better then "pacing" goes out of the window and I end up making myself worse by doing far more than I should, I know it's not what I should do, but it's a hard habit to break. If I am having to go into nearest town, say to pick up meds I aim to do that mid afternoon, then I get an uncomfortable time until my early eve meds kick in. I try to avoid any social activity during the evening because as the evening goes on I get a bit more comfortable and can enjoy lying on the sofa with my dogs watching tv. After bedtime meds, I enjoy propping myself up with pillows and strategically placed heated wheat bag round my shoulders/neck and then reading for a while with the radio on......then comes the time I don't enjoy and that is finding a comfortable enough position in which to attempt to fall asleep. This can take ages and then of course there is the joy of waking only to find its an hour since I fell asleep and then having to go through the whole rigmarole again, and again........then, oh joy be unconfined, it's morning again and the whole thing starts over.......deep deep joy Foggy x

so glad you put this i used to love people and company but i seem to keep myself to myself alot these days i avoided a family meal (20+) last week i just couldnt face it but other half of me would have loved to have gone it just seems to much when my daughter and family come i shattered when they've gone and we only just sit chatting i find this very strange lol i seem to be morphing into a person i dont know lol....x

4 years agoHidden

Yes its taken me a while to work out how much I have withdrawn.... And not been abandoned x

By the way my name is stepper not slapper HAHAHAHA.

Although I wish I'd thought of it.....would have made people wonder what I was up to lol

I used to be an early bird, and i would still prefer to be up early, but I lie there, putting it off. I'm silly, 'cos I know that meds, plus two cups of tea, and a hot shower will make me feel much better.

On the rare occasions that I do get up at sparrow phart, I always say - "This is good, must make a habit of it!" maybe I really will one day!

Hi all, yes, mornings are hard, mainly because i wake up feeling ok, and think yea, its all gone` i`ll get up and do this and this ...... we all know the rest don`t we! so agree about night times, i love sitting in the quiet too, doing crosswords or a game. The radio is my constant companion. I `know` whether i`m going to be able to sleep, as soon as i put my head down...., so i get up again, the only problem is sitting in the kitchen is too close to the fridge and the biscuits! I am an artist, so i have the luxury of a tiny studio, but, as we all know, spirit may be willing, but flesh not so! I don`t like going out at night unless its local, i can`t sit for too long for a performance etc., i`m also aware of my appearance at the moment, not a pretty sight! We are so lucky to have a large wood burner and i`m happy curled up with my dogs. Love to you all xx

My worst time is waking up with pain, by 9 am ok, by 11 my brain works , by 1pm feeling tired by 3 pm am pretty much pushing myself by 9 bacically ready for bed but can stretch it to 10 pm it's strange because most people that have fibro can't do mornings but that's when am at my best . I sometimes wonder if I have something else lol x

I used to be a nanny/housekeeper and had to get to work at six forty five in the morning. The fibro had already started before the kids grew old enough not to need me any more and it was hard going but I know if I have to I can push myself in the morning. I prefer not to though and have the luxury of being a stay at home wifey and Mum to the last one living at home.She is 21 . She and hub both work so it's down to me all the washing and hoovering etc but I have worked out a way to pace it now.

omg glad its not just me then it takes me ALL DAY to get going but bring on 10.30pm ish and i feel very alive i too stay up when i feel like this as i dont want to miss it!!!!! i have been known to do most of my housework in the night lol.....x

Your lucky then spidey, i don't know how i get thru the day sometimes.

I run my own business lol do't laugh but i help and make other people feel better, (im a massage therapist) I used to be able to see 10 to 12 clients a day, Up until 4 yrs ago now im lucky if i can manage 3 or 4 daily Which has significantly affected my life syle as i don't earn the money i used to.

I moved in with my partner 16 mnths ago thinking it would be nice to have some one around to help out. Ha what a joke, ive now doubled my work load. My 21 yr old daughter still lives at home and does help me. But my partner is very lazy and so ids his son who stays with us fortnighlty. Even tho he knows im in pain and can't lift the hoover, he never lifts a finger to help. Im at my worst in the morning very stiff and painful, so i have to make sure that all the housework , washing up etc is done at night as forget it no way can i do it in the morning.

And my partner is quite happy to sit on his lazy butt watching me struggle.......

yep...stop struggling!!!!!! cos they will let you....dont do it ,it may just make them see you cant do it all.....so do nothing........see how that goes....i so know what its like to have a lazy husband mine cant cook at all i was having a very bad flare up and he went to make a sandwich but ONLY FOR HIMSELF he just walked straight past me flat out on couch without a second thought after a few choice words and a few years down the line he actually does help now but if you let it go they will let you keep struggling ....good luck....x

Thanks louda, it really upsets me as i spent 18yrs bringing up my two lovely daughters on my own. And building up my holistic business. Ive worked so hard over the years and now would like to take it a little bit easy.

I know it sounds horrible but i dread my partners son coming to stay even tho its only fortnightly. He has the most disgusting habbits, at 14 he still urinates all over the floor and where else he can aim. And as for the other well i won't go into that. He thinks our house is ahotel he makes me so angry. As my partner just lets him behave in this lazy way. We argue about it as he thinks im being horrible to his son. But ive told him he is a lazy parent, and so is his ex.It doesn't bode well as you can imagine. Sometimes i think i would be better off on my own. Then at least id only have my own mess to clean up. xx

i know that feeling only to well and if i had the money then i wouldnt hesitate the thing is to weigh up the good with the bad does one cancell out the other? i have no companionship at all my husband can sit all night and never speak and i mean not a word he cleared the snow from around the car but only his side he said my side is not that deep!!!! just what can you say to that.When your stepson visits and his aim has gone astray pass your other half a cloth it mighnt make him think or better still shame the son and pass him the cloth give that a try,arnt we a pair lol does us good to have a moan,here for you anytime.....x

i feel odd but the only time i feel slihtly okay is afternoon mid-late then i start getting real low,painful,ratty tired. the mornings are as u all describe stiff sore and i feel like i am dragging myself about not with it. the pain some mornings is that bad i simply cant get up til about hr after my hubbys given me all my meds and that. dressing is awful for me i am a size 10 with 34 g bust and trying to put my bra on is sheer agony aswell as any other top dress but then trying to bend for trousers or bottoms is just as painful i feel i cant win. does anyone else feel like they try but just cant suceed.

kez x

i end up needing help from my hubby in pretty much all areas of my life. least he is kind enough to do it for me!

for trousers or leggings try sitting on the side fo the bed to get your feet in then lay back and get hub to hold up your feet while you pull them up your legs, then stand and you just have to do the top up. Its how I put tights on. As for bra maybe get stretchy lycra crop top for when arms are really bad and save all the maneuvering and hooking.

Well from yesterday, getting up at six and the joy of no wake up pain, going out an ddoing my little jobs for elderly people to today..not even being able to turn over in bed on wake up, crabbing sideways downstairs and feeling like a ball of tangled knitting was inserted in my head to replace my brain!!!

Not so bad this afternoon after meds etc. Have cleaned the bathroom and tidied up. Hooked a portion of fish pie out of the freezer so I will eat later on my own.

Mornings - what are they?? I hardly see them. I sleep best between 5 am and midday, lol. I find it really hard to get up and hit a wall of fatigue around 4-5 pm and need to sleep for one and a half to two hours!

My partner and I don't work anymore but we're not yet retired, and so we spend pretty much 24/7 together unless I'm round at a neighbour's for our weekly coffee & natter, or out for an afternoon for my periodic manicures. (I'm starting yoga in 2 weeks' time which I'm hoping will help me strengthen my core muscles and get proper flexibility back)

Mornings are very creaky and foggy, but I have a partner who doesn't hassle me to get up and get on with things. He lets me ease into the day with meds, cuppa and breakfast in bed until I'm ready to face the day. I browse the internet at my leisure and then get up to get on with physical things once my meds are properly on board.

I take a second lot of meds at lunchtime, then usually have a window of opportunity to do something active for a couple of hours, or 3 if I'm lucky. That's when the housework or trips out take place. , unless we have something else scheduled. We'll either run an errand in the car, do housework or I'll potter in our porch which is filled with plants which need tending.

Another batch of meds late afternoon will give me just about enough oomph to sort dinner out, if my beloved isn't already planning something. I really have to pace things carefully and do a little bit here and a little bit there. My partner nags me to sit down and let him get me whatever I need.

After that, it's downhill! Once I'm on the sofa for the evening, that's pretty much it for activity. I only get to my feet to crawl upstairs to the bathroom or simply loosen my hips & knees for a few minutes. How bad the evening pain is depends, naturally, on how much walking/standing I've done during my afternoon "peak" lol. My partner will often treat us to something nice from the supermarket or will take me out to a local eatery if my legs will get us there.

This coming week is going to be all the harder because my beloved has gone away to visit his family for a week, so he won't be here to ferry me the things I need by me, or to cuddle me when the pain waves overwhelm me, or make me laugh at some daft joke he's just concocted. It's his mission in life to make me laugh and feel loved! Without him around, life is so much harder, and I count my blessings that he understands me enough, after only a year of living together, to make life less painful than it would otherwise be. He worked the "spoons" theory out for himself and nags me when he sees me doing too much, bless his wonderful heart